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Posted on 8 Jul 2008 by Tribal Dancer   In: Emotional

Caring for yourself

One of the hardest things for me to do, besides coming to terms with mom’s ALS in general, was to learn what I needed to do for myself.  Being a caregiver can be a wrenching experience but there are a few things you can think about that may help.

Posted on 8 Jul 2008 by Tribal Dancer   In: General

A plea to the other people

This is a simple plea to people who a) have a handicap sticker, b) don’t have a handicap sticker or c) ever drive.

Those of you without a handicap sticker:
If you aren’t handicapped, please don’t park in handicap spaces, even if only for a minute.  It makes it very hard for people who actually need one.  And believe me, if we see your car in a handicap space and you don’t have a sticker or a plate, the words that will be uttered about your general person will be very colorful indeed.

Posted on 8 Jul 2008 by Tribal Dancer   In: Life with a Van

The Utah Rampvan Nightmare

On our vacation this month, we went through Missouri, Kansas, Idaho, Utah, Nebraska, Wyoming, Oregon, Montana and Washington (might have left one off).  We had to stop many times for bathroom breaks, gas breaks or, on the way back, letting kitty go to the bathroom breaks (yes, we brought home a kitten).  We did fairly well in the Rampvan but Utah was a nightmare.

Posted on 8 Jul 2008 by Tribal Dancer   In: Accessibility

Making places truly handicap accessible

We had the opportunity to try out a large number of public restrooms on our recent drive through Missouri, Kansas, Iowa, Idaho, Utah, Nebraska, Wyoming, Washington and Oregon.  Traveling with someone in an electric wheelchair can be very eye-opening, especially when said person needs assistance in the stall.    So I’ve put together a list of things builders can do to really make a public restroom handicap accessible as well as some instances of places we liked.

A while ago I wrote about my frustration with people who pull their cars in next to my mother’s rampvan, after watching her come down the ramp and knowing she would need to use it again (see that article here). My experiment involved buying three bright orange traffic cones (I bought these) and putting them in the van. When anyone took mom somewhere and there were no van accessible spaces, the van could be parked anywhere with two open spaces. Then the cones could be put next to the van in the empty space needed for the ramp to come down.

Posted on 8 Jul 2008 by Tribal Dancer   In: Life with a Van

My mother’s rampvan is possessed

One of the most useful (and expensive) pieces of equipment in Mom’s life with ALS is our Toyota Sienna rampvan.  It happily transports her and her motorized wheelchair wherever she wants to go, so long as there aren’t any speed tables.  Or large bumps.  Or some small bumps for that matter.  I appreciate the thing but I’m convinced it’s possessed.  It is at the very least extremely temperamental.  You can almost hear it speak.

Posted on 8 Jul 2008 by Tribal Dancer   In: Life with a Van

An extreme aggravation

My mother has ALS. If you don’t know what that is, it is essentially a disease that destroys your motor neurons and causes your muscles to become completely ineffective. As a result, when she leaves the house, she uses a motorized wheelchair and goes around town in a rampvan.

My first aggravation is people who park in handicapped spaces even though they are fully mobile and can walk just fine. Thankfully, since mom takes her motorized wheelchair, she can park farther away from the store, even though at times it is ridiculous that she has to. This leads to aggravation number two, which is even more annoying.